Australian Institute of Health and Welfare (2021) Palliative care services in Australia, AIHW, Australian Government, accessed 28 November 2021
Australian Institute of Health and Welfare. (2021). Palliative care services in Australia. Retrieved from https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia
Palliative care services in Australia. Australian Institute of Health and Welfare, 29 October 2021, https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia
Australian Institute of Health and Welfare. Palliative care services in Australia [Internet]. Canberra: Australian Institute of Health and Welfare, 2021 [cited 2021 Nov. 28]. Available from: https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia
Australian Institute of Health and Welfare (AIHW) 2021, Palliative care services in Australia, viewed 28 November 2021, https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia
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A palliative care phase is used to describe the clinical situation of patients and their families and to evaluate the associated care plan or clinical intensity and urgency of the needs of patients and their families.
In PCOC data, a palliative care phase describes a stage of the patient’s illness within a palliative care episode and provides a clinical indication of the level of care required. There are 4 palliative care phases included in PCOC (Box PCOC.2). When assigned, the first 3 phases (stable, unstable, deteriorating) reflect the effectiveness of the plan of care and the urgency of response to patient and family care needs. The terminal phase is assigned when the patient is likely to die within days. It should be noted that palliative care phases are not necessarily sequential. A patient may transition back and forth between phases, therefore it is likely that a patient will have more than one phase within an episode.
Box PCOC.2. PCOC palliative care phases
The 4 palliative care patient phases are:
In 2020, there were about 170,700 palliative care phases included in PCOC, with just over half (54%) occurring in community settings (92,400 compared with 78,300 in inpatient settings). On average, patients had 2.4 phases per episode (2.2 in inpatient settings compared to 2.5 in community settings).
Of all palliative care phases in 2020, 2 in 5 (40%) were in the deteriorating phase, followed by almost 1 in 3 (31%) in the stable phase, with terminal (15%) and unstable (14%) phases about half as frequent (Figure PCOC.5). While deteriorating and stable phases were more common than other phases in both community and inpatient settings, the proportion of these phases were higher in community settings (44% and 36%, respectively) than inpatient settings (35% and 26%, respectively). However, the proportion of phases in the terminal phase in inpatient settings was 2.6 times as high as in community settings (22% compared with 8.4%), with the unstable phase also higher in inpatient settings (18% compared with 12% in community setting).
Vertical bar chart showing the per cent of phase counts of palliative care phases by inpatient and community settings. 25.5% of phases in inpatient setting, 36.2% in community setting, and 31.3% of phases in both inpatient and community (total) settings were Stable; Unstable, 17.7%, 11.7%, and 14.4%; Deteriorating, 35.1%, 43.7%, and 39.8%; Terminal, 21.7%, 8.4%, and 14.5%. Refer to Table PCOC.7.
Source data: Palliative care outcomes Table PCOC.7
In 2009, PCOC and its participating services developed and implemented a set of national outcome measures and associated benchmarks. The PCOC benchmarks are aspirational and reflect good practice based on outcomes in the top 20% of services. These aim to drive service innovation and allow participating services to compare their service nationally. The PCOC outcome measures cover:
A full description of each of the PCOC outcome measures and benchmarks reported here is included in the Data Sources section. Table PCOC.11 also presents each benchmark, along with the proportion of palliative care episodes/phases meeting the outcome for each benchmark in different care settings; see Figure PCOC.6. PCOC also reports on 8 casemix-adjusted outcome measures, not reported here (see PCOC 2021a and PCOC 2021b).
Benchmark 1: 90% of patients must have their episode commence on the day of, or the day following, date ready for care
This benchmark aims to assess whether patients received timely palliative care in response to their need. The vast majority of patient episodes (93%) commenced on the day the patient was ready for palliative care, or the day after. This was the case for almost all episodes in hospital (inpatient) settings (98%) and most episodes in community settings (87%).
Benchmark 2: 90% of patients are in the unstable phase for 3 days or less
The unstable palliative care phase indicates that an urgent change in the plan of emergency treatment is required (see Box PCOC.2). This benchmark aims to assess whether there was a timely resolution of unstable palliative care phases. Overall, the majority of unstable phases (88%) were resolved within 3 days or less, with this proportion slightly higher in inpatient settings than in community settings (90% compared with 86%, respectively).
Benchmark 3: Change in symptoms and problems
A change in symptoms and problems during palliative care provides information about the responsiveness and appropriateness of the care plan in place. A positive outcome for patients is to have symptoms and problems in the absent to mild range at the end of a palliative care phase.
Benchmarks 3.1 to 3.10 represent common palliative care symptoms and problems, including pain severity, distress caused by pain, distress caused by fatigue, distress caused by breathing problems, and family/carer problems.
There are 2 benchmarks for each symptom (or problem):
Achieving an absent/mild symptom (or problem) outcome is less likely when the patient has moderate or severe symptoms (or problems) to begin with, especially for those with distress from fatigue and breathing problems, as is reflected in the 60% target for the national benchmark, outcome results observed and Figure PCOC6:
Vertical bar chart showing PCOC palliative care outcome results for each benchmark, by inpatient, community, and total care settings. Benchmark 1, 98.4% of episodes/phases in inpatient settings, 86.9% in community settings, and 92.8% in all care settings; Benchmark 2, 90.1%, 86.2%, and 88.4%; Benchmark 3.1, 92.0%, 85.6%, and 88.6%; Benchmark 3.2, 63.3%, 60.2%, and 61.7%; Benchmark 3.3, 90.6%, 85.4%, and 87.6%; Benchmark 3.4, 58.8%, 55.8%, and 57.3%; Benchmark 3.5, 92.1%, 82.9%, and 87.2%; Benchmark 3.6, 54.9%, 42.2%, and 47.3%; Benchmark 3.7, 95.5%, 93.0%, and 94.2%; Benchmark 3.8, 54.0%, 45.9%, and 49.8%; Benchmark 3.9, 93.9%, 82.9%, and 88.3%; Benchmark 3.10, 55.9%, 51.4%, and 53.0%. Refer to Table PCOC.11.
Source data: Palliative care outcomes Table PCOC.11
The COVID-19 pandemic was anticipated to impact palliative care outcomes in a number of ways, including disruption in service delivery and increased demand of palliative care related resources such as palliative care specialists and medications (WHO 2020).
Between 2019 and 2020, the duration of palliative care episodes and the benchmark outcomes were relatively similar. This suggests that the pandemic-related restrictions and activities during 2020 did not appear to have a large impact (as observed in these data) on palliative care outcomes. During 2020, certain Australian states were more affected by pandemic-related restrictions and lockdowns, which may result in differences that are not able to be observed in these data. More data over a longer period of time, and including patients experiencing COVID-19 who received palliative care, will provide new insights on the effects of the COVID-19 pandemic on palliative care outcomes.
ABS (Australian Bureau of Statistics) 2013. Socio-Economic Indexes for Areas (SEIFA) 2011. Canberra: ABS. Viewed 24 July 2021.
PCOC (Palliative Care Outcomes Collaboration) 2021a. Palliative Care Outcomes Collaboration Clinical Manual. Wollongong: University of Wollongong. Viewed 24 July 2021.
PCOC 2021b. PCOC Research and Data. Wollongong: University of Wollongong. Viewed 9 July 2021.
WHO (World Health Organization) 2020. Discussion on palliative care in the time of COVID-19. 8 April 2020. WHO. Viewed 9 July 2021.
The Palliative Care Outcomes Collaboration (PCOC) is a national program using standardised validated clinical assessment tools to measure and benchmark patient outcomes in palliative care.
Participation in the PCOC is voluntary and open to all palliative care service providers across Australia. Representation is sought from public and private health sectors, rural and metropolitan areas, and inpatient and community settings. The PCOC program captured approximately 90% of all specialist palliative care providers in Australia by 2019. PCOC aims to assist services to improve the quality of the palliative care they provide through the analysis and benchmarking of patient outcomes. The data are embedded into routine clinical practice.
The PCOC palliative care outcomes collection data set (PCOC 2021) includes data on patient demographics, clinical setting information, and patient outcomes from the following clinical assessment tools (Daveson et al. 2021; PCOC 2012):
Data using Version 1 of the PCOC data set were collected between January 2006 and January 2007. Version 2 of the data set was enacted from July 2007, and Version 3 was implemented in July 2012 (PCOC 2012). More information about this data set can be found in the PCOC Version 3.0 Data Dictionary and Technical Guidelines 1.2.0.
The national figures used in this report reflect all palliative care services that submitted data for the January—December 2020 period. A full list of these services can be found on the Palliative Care Outcomes Collaboration website.
In 2009, PCOC and participating services, developed and implemented a set of national outcome measures and associated benchmarks to drive service innovation and allow participating services to compare their service nationally. The most recent update was released in 2015, which included the addition of 6 measures to Benchmark 3 relating to fatigue, breathing problems and family/carer problems. More information can be found on the PCOC Research and data webpage (PCOC 2021).
Further detail on the definition and measurement of each outcome measure and associated benchmark are provided in the following.
Outcome measure 1: Time from date ready for care to episode start
Measures the time (in days) between the date the patient is ready to receive care and the actual start date of the episode of palliative care by the service. This is measured for all episodes of care and across all settings of care.
To meet Benchmark 1, 90% of episodes of care must commence on the day of, or the day following, the date ready for care.
This measure replaced ‘Time from referral to first contact for the episode’ in July 2013 in consultation with participating services.
Outcome measure 2: Time in unstable phase
Measures the number of days the patient spent in an unstable phase. An unstable phase alerts clinical staff to the need for urgent or emergency intervention requiring an associated change in the existing care plan. Once assigned, and with the new care plan in place, the clinical team monitor for improvements in the patient and or family/carer condition. Improvement can be demonstrated through observation and clinical assessments (reducing symptom distress and problem severity scores). With signs of improvement, the new care plan demonstrates its effectiveness and thus, the patient/family/carer can be moved out of the unstable phase into another relevant phase. However, at any time a patient is identified as dying within days (clinical indicators), the phase is immediately changed to terminal phase.
For services to meet Benchmark 2, 90% of unstable phases must last for 3 days or less.
Outcome measure 3: Change in symptoms and problems
Symptoms and problems for Benchmark 3 include the items of pain severity, distress caused by pain, distress caused by fatigue, distress caused by breathing problems, and family/carer problems.
Symptoms and problems are measured at the start and end of a phase, and can also be measured throughout the phase. Phase records must have valid start and end scores to be included.
Two of the 5 PCOC clinical assessment tools are used to measure these patient and family symptoms and problems: the PCOC Symptom Assessment Scale (SAS) and the Palliative Care Problem Severity Score (PCPSS). The SAS is a patient-rated tool that measures distress caused by symptoms that are common in palliative care. The PCPSS is a clinician-rated tool that measures the severity of 4 palliative care domains, including pain and family/carer problems.
A positive outcome for a patient is to have the symptom/problem in the absent to mild range at the end of a phase (i.e. when the type of phase changes or the person is discharged from the service).
There are 2 benchmarks for each symptom/problem. The first benchmark is that at least 90% of phases that start with patients experiencing absent/mild symptoms (or problems) remain absent/mild at the end of the phase. This is reflective of anticipatory care. The second benchmark is that at least 60% of phases that start with patients experiencing moderate/severe symptoms (or problems) reduce to an absent/mild level by the end of the phase. This is reflective of responsive care.
Outcome measures 3.1–3.4: Pain
Pain management is acknowledged as ‘core business’ of palliative care services; hence, measuring patient pain is considered to be a vitally important outcome for palliative care services. The PCPSS measures pain severity rated by the clinician, used in Benchmarks 3.1 and 3.2, and the PCOC SAS measures patient-rated distress from pain, used in Benchmarks 3.3 and 3.4.
Outcome measure 3.5–3.6: Fatigue
The change in distress from fatigue is measured from the start of a phase to the end of the same phase via the PCOC SAS. This is used for Benchmarks 3.5 and 3.6. In 2015, PCOC introduced this outcome measure into routine reporting.
Outcome measure 3.7–3.8: Breathing problems
Breathing problems is a common symptom reported by patients receiving palliative care. The PCOC SAS is used to measure patient distress associated with this symptom. This is used for Benchmarks 3.7 and 3.8. In 2015, PCOC introduced this outcome measure to routine reporting, which has recently been developed further (Daveson et al 2021).
Outcome measure 3.9–3.10: Family/carer problems
Palliative care is a holistic discipline which considers the needs of the patients and their family and carers. The PCPSS family/carer domain measures problems associated with a patient’s condition or palliative care needs. The clinician reports on the severity of the problems of their family/carer. This is used for Benchmarks 3.9 and 3.10.
Daveson BA, Allingham SF, Clapham S, Johnson CE, Currow DC, Yates P, et al. 2021. The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs. PLoS ONE 16(3): e0247250.
Palliative Care Outcomes Collaboration (PCOC) 2012. PCOC Version 3.0 Dataset, Data Dictionary and Technical Guidelines. Document version 1.2.0. Wollongong: University of Wollongong.
PCOC 2021. PCOC Research and Data. Wollongong: University of Wollongong. Viewed 9 July 2021.
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